Last August I came across a poem called "Alzheimer's Poem" that really touched my heart. I found that the poem is actually titled "Do Not Ask Me To Remember" and written by Owen Darnell. I located a copy of the poem on the Alzheimers.net blog
My mother suffered from dementia before passing away in September of 2008. My brother, sister and I battled this disease for her the last couple of years of her life. We don't know when it started or if she even understood what was really going on. There were times that she seemed herself and other times, nothing made sense. I could get so angry inside.
Here is "Progression of Life" that I wrote in February, 2012.
As a young child, do you remember when an old relative passed away? You know, the great-great uncle that you couldn't remember ever seeing before. He's just an old man - sort of spooky, too. He just doesn't look real lying in that pretty shiny wooden box with the satin pillow and cover; hands folded gently across his waist. The smell of roses consumes you. You really don't feel good and just don't want to be there, but your mother holds your hand close to her side as she talks to other unknown relatives. Her voice is quiet and soft. You feel safe with her by your side.
As an older child, a young child of one of your mother's friend's dies. You go with your mother to the funeral. You don't know too many of the people there, but you understand their sadness. You also feel the sadness seeing a child lying in that pretty shiny wooden box with the satin pillow and cover; with hands gently folded across his waist. The fragrance of roses is familiar. It's sort of scary seeing a child like yourself and you stand close to your mother - and you feel safe.
You grow up and start a life of your own. Through all the ups and downs, your mother is always there to lend encouragement, advice and yes, sometimes a little financial help. She never tries to run your life; she is just your support when you need her. You feel safer just knowing that she is close by - you are still her child. She is still your mother.
The progression of life continues and then it hits you. Your mother is at the old-age phase. She's acting different. Oh, she has always been a little eccentric, but this is different. She talks about things that aren't real. She forgets to pay bills. She is not taking care of herself. She thinks people are going to take her stuff. She thinks other people are you......... We children start talking about what we need to do. There are no good choices for our mother. In order for her to be safe, we are going to have to take her happiness from her. The happiness that she had worked so hard for. The happiness that she so deserved. But, she can't live by herself surrounded by all her pretties and possessions. The hallucinations have taken over.
She walks downtown and sits on a bench outside the Subway waiting for her son to pick her up. There were no plans for her son to pick her up. Her son gets a phone call from the nice sheriff. Her son goes into town to pick her up and take her back home. She knew he was suppose to pick her up.
Decisions were made. She was not happy. While she stayed with me, there were good days and there were bad days. Sometimes we could talk and remember the good times. A lot of the times we argued over stupid stuff - she didn't want to take her medicine, she didn't want me throwing her trash away. She wanted to save everything. She would lock me out of the bedroom. I tried not to get angry, but there were times that I was so angry inside. I tried not to be because I knew she couldn't help it. I just wanted her to be like she use to be. I wanted her to be my mother. I wanted my mother back!
Before I would go to work, I would turn on the TV to CNN. I never understood why she wanted to watch that all day. She could get so upset over politics. I would bring her breakfast and lunch to her. Then, made sure she took her medicine. She stayed in the bedroom with the door closed during the day. She didn't like my dog and my son was also there. She just felt safer in the bedroom. I would lean down and give her a hug and kiss before leaving for work. She would always tell me I looked pretty. One morning she said, "If I can do anything for you, just let me know. I don't have much, but I will help you."
I think it took me awhile to realize why I would get so angry with her. I was angry because I was losing my mother and it was happening right before my eyes. I couldn't control it. I was losing the person that made me feel safe and loved me no matter what. She wasn't fighting the dementia so she could keep being my mother. I wanted her to fight the dementia - wasn't I giving her a pill to help slow that progression down?
Mothers always consider their children still their children no matter how old they are. I had not thought of myself as a child for years. Actually, I'm not sure I ever thought of myself as a child. But, like we never stop being a mother, we also never stop being a child. The anger was really coming from the child in me. The child was losing her mother, the loving, protective (and, sometimes eccentric) mother that made her feel safe and loved no matter what.
She really couldn't help that the dementia had taken over. There was no fight left to fight. It was just the progression of life...............
As an older child, a young child of one of your mother's friend's dies. You go with your mother to the funeral. You don't know too many of the people there, but you understand their sadness. You also feel the sadness seeing a child lying in that pretty shiny wooden box with the satin pillow and cover; with hands gently folded across his waist. The fragrance of roses is familiar. It's sort of scary seeing a child like yourself and you stand close to your mother - and you feel safe.
You grow up and start a life of your own. Through all the ups and downs, your mother is always there to lend encouragement, advice and yes, sometimes a little financial help. She never tries to run your life; she is just your support when you need her. You feel safer just knowing that she is close by - you are still her child. She is still your mother.
The progression of life continues and then it hits you. Your mother is at the old-age phase. She's acting different. Oh, she has always been a little eccentric, but this is different. She talks about things that aren't real. She forgets to pay bills. She is not taking care of herself. She thinks people are going to take her stuff. She thinks other people are you......... We children start talking about what we need to do. There are no good choices for our mother. In order for her to be safe, we are going to have to take her happiness from her. The happiness that she had worked so hard for. The happiness that she so deserved. But, she can't live by herself surrounded by all her pretties and possessions. The hallucinations have taken over.
She walks downtown and sits on a bench outside the Subway waiting for her son to pick her up. There were no plans for her son to pick her up. Her son gets a phone call from the nice sheriff. Her son goes into town to pick her up and take her back home. She knew he was suppose to pick her up.
Decisions were made. She was not happy. While she stayed with me, there were good days and there were bad days. Sometimes we could talk and remember the good times. A lot of the times we argued over stupid stuff - she didn't want to take her medicine, she didn't want me throwing her trash away. She wanted to save everything. She would lock me out of the bedroom. I tried not to get angry, but there were times that I was so angry inside. I tried not to be because I knew she couldn't help it. I just wanted her to be like she use to be. I wanted her to be my mother. I wanted my mother back!
Before I would go to work, I would turn on the TV to CNN. I never understood why she wanted to watch that all day. She could get so upset over politics. I would bring her breakfast and lunch to her. Then, made sure she took her medicine. She stayed in the bedroom with the door closed during the day. She didn't like my dog and my son was also there. She just felt safer in the bedroom. I would lean down and give her a hug and kiss before leaving for work. She would always tell me I looked pretty. One morning she said, "If I can do anything for you, just let me know. I don't have much, but I will help you."
I think it took me awhile to realize why I would get so angry with her. I was angry because I was losing my mother and it was happening right before my eyes. I couldn't control it. I was losing the person that made me feel safe and loved me no matter what. She wasn't fighting the dementia so she could keep being my mother. I wanted her to fight the dementia - wasn't I giving her a pill to help slow that progression down?
Mothers always consider their children still their children no matter how old they are. I had not thought of myself as a child for years. Actually, I'm not sure I ever thought of myself as a child. But, like we never stop being a mother, we also never stop being a child. The anger was really coming from the child in me. The child was losing her mother, the loving, protective (and, sometimes eccentric) mother that made her feel safe and loved no matter what.
She really couldn't help that the dementia had taken over. There was no fight left to fight. It was just the progression of life...............
